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Topic Never a good night sleep due to frequent urination Go to previous topic Go to next topic Go to higher level

By loola On 2011.05.17 18:25
Hello Forum,

I'd like to ask you a question that some of you may have more experience with. My PD bf hasn't been getting any good night sleep lately due to frequent trips to the bathroom throughout the night. He is scheduling an appointment with his urologist and I'm hoping to maybe hear some advice/suggestions here as well. His movement is worse at night and sometimes when he is too frozen to walk to the bathroom, he pees into a container by his bed.
Is there any medication that reduces the urge to urinate at night or should he consider a sleep aid and adult diapers? The sleep deprivation is really bad in the long run. It affects his daily physical functioning and his mental abilities as well. I assume that even the PD meds aren't as effective with lack of sleep. Plus he tends to have daytime sleepiness. It happens that he suddenly passes out during a phone conversation or while he's reading and wakes up immediately after he drops the phone or paper. He also starts falling asleep while we're talking, no matter how exciting our conversation may be :). Thanks for any advice in advance.

By LOHENGR1N On 2011.05.17 19:22
Ah loola, I wish I had an answer or magic pill for you. Instead all I can do is welcome you to life with Parkinson's Disease. A uninterrupted night of sleep, what's that? I can't even remember it now. Falling asleep during conversations? Yup I do that, along with reading, watching TV, phone, getting food to mouth all that good stuff. Seems the only time I can't fall asleep is when I'm supposed to. Sleep deprivation is a fact of life now, we somehow have to learn to live with it. Again I wish I had the answer but I don't, Twenty five plus years of sleep deprivation and I'm still bouncing off doorways. Take care, best of luck and hang in there.

By loola On 2011.05.17 19:38
Lohengrin, I'm aware that it may get rather worse than better...still there may be something to make it a bit better or easier...
He believes that a urologist will fix him and I don't want to destroy his hope. Actually, his current urologist can't make it any worse. Last time he saw him about his urination problem was before we met. The urologist performed surgery which terminated his ability to ejaculate and hold an erection. The nighttime urination is still only getting worse. The only difference now is that he considers a different urologist. Some doctors are butchers. I read that it is common that prostate surgery performed on people with PD may make urination problems worse, so for the rest of you out there think twice before you undergo the knife.

By pdspouseagain On 2011.05.17 20:56
Be aware that some meds for frequent urination can also cause or aggravate hallucinations or other problems mentally. My PD husband gets up anywhere from 2-5 times per night.

By susger8 On 2011.05.18 07:15
Sanctura (generic name trospium) is considered the medication that is least likely to cause problems for PWPs. It seems to help my father without increasing hallucinations or confusion. You could also consider using a condom catheter at night. You don't need a prescription, and Medicare and insurance pays most of the cost. There are a number of online suppliers who will usually send you some free samples. Unfortunately, my dad just pulls the catheters off in his sleep so they don't work for him.

Sue

By Michele On 2011.05.18 09:13
Hi Loola, I feel your pain. In addition to nighttime urination, my PWP has urges most of the day without being able to urinate. I feel like I spend my days in the bathroom. Anyway, I also recommend Sanctura as it is least likely to create psychotic side effects and does help (but not completely). As far as nighttime urination and lack of sleep, my PWP takes Ambien every night (this causes constant battles with his insurer but his doctor is up to the fight). Taking Ambien helps him to get sleep and he is still able to wake up to urinate. However, if he is really exhausted he can sleep through the night with waking - he uses depends and a pad. Your bf does need to find a good urologist who will work with him. Best of luck to you both.

By loola On 2011.05.18 09:25
Thanks guys. I just can't see myself changing diapers of an adult...I have carpal tunnel from painting and can't lift heavy stuff or rotate my hand too much. This is still in the future, but are there agencies or paid caregivers who come daily to help putting the person to bed and getting them ready in the morning? I can imagine it's not cheap...but I just can't do it. It's a problem when he needs to be turned too. I can do other things like shopping, laundry, making food, feeding him if necessary. He is still independent, but who knows for how long. I'm glad that I don't sleep in the same room with him. It's a constant lights on/lights off with demands and complaints.

By packerman On 2011.05.18 09:29
my hubby is also on Sanctura & Ambien. seems to work for him.

By parkinit On 2011.05.18 19:23
loola -

We have gone through all the meds for urgency - including Sanctura, which was effective for awhile, but now it appears nothing helps, so my PWP wears Depends all the time. He wakes up several times a night, wears an external catheter (which maybe your bf should look into so he isn't up and down constantly. We've had a few leaks, but my many other nights rest are worth the few leaks and the leaks, by the way, were invariably caused by my PWP pulling the catheter out or rolling over to far and pulling the catheter off.

There are tools you can use to help your PWP with turning. One PT hooked something akin to a ski rope to the bottom of our bed for awhile so he could pull himself out of bed. This could also be used to provide assistnace with rolling from one side of the bed to the other. There are also boards with bedside bars you can slide between your mattresses. Another option is a pole that goes from the floor to the ceiling to provide something to grab. These are all available online at medical supply stores.

We are also in the process of hiring some help through the night as I cannot function during the day - sometimes I'm awakened 4 times in a 40 minute timeframe and then another 3-4 times throughout the night. It IS expensive, but someone suggested to us to hire a nursing student, who is excited to get the opportunity to practice what he has learned and it is cheaper than hiring a full-fledged nurse. We have to pay him as though he was our employee, though. Check on this with your local CPA.

Good luck.

By dkleinert On 2011.06.03 12:08
My PD husband tried Sanctura with his Urologist and he ended up in the hospital in renal failure. Sanctura caused his to retain urine, and he didn't tell me about it until he had drunk 3 liters of water during the night trying to make himself pee. He had so many problems after that.

Most recently the doc gave him Proscar and Flomax, and 2 days later his feet swelled up like balloons. The Urologist says that the meds didn't cause the feet swelling, we are going to our family doc today to make sure it isn't something else. He can't even wear his sandals - his feet are so swollen that the velcro does not expand that far........wish there was an answer for the urgency and frequency - Joe never gets to sleep all night and the urgency ruins so many things for him.......wishing for a cure!!!!!

By jockdoc On 2011.06.03 16:37
Hi loola, Barb and I knew well of what you speak. Our best effort was to put a commode next to her side of the bed where she could slide over to the thing. This worked well for sometime but worsening PD caused me to get up each time she needed to make water. This eventually brought me down because of sleep loss.
It's tough without some help to watch the PD through the night. Sleepless nights will bring down the best of us. As for me, I was hospitalized, and Barb went to a Nursing Home. The worst outcome because I just plain wore-out. I had promised Barb she would never see a Nursing Home, but I broke my promise. This fact troubles me yet today 4 years later. JockDoc

By loola On 2011.06.03 17:57
Hello Jockdoc,
From reading your posts I feel that you were an amazing, very loving and giving husband and caregiver. You experienced burn out and had no choice but to get help and to place her in a home. You couldn't have known how much it would wear you down when you made the promise. Please try to forgive yourself and enjoy your life as much as you can. It doesn't serve anyone if you still beat yourself up about the past.


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